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Glioblastoma Multiforme

This post is a guest post by Alexander Moore. Graphic created by Laurel Jackson.

It saddened me deeply to hear that American hero John McCain was diagnosed with Glioblastoma or GBM, the most common and most malignant of brain tumors. It is simply not fair for someone who has already suffered the unimaginable horrors of war and captivity to now have to endure the pain of Brain Cancer. Senator McCain will be 1 of nearly 24,000 people diagnosed with primary brain cancer this year in the U.S. Not a lot in the grand scheme, but for almost 24,000 people and their families, it’s devastating. The median survival is 16 months and the effects of the disease and treatment deeply impact quality of life.

Senator McCain has already had surgery to have as much of the tumor removed as possible, but he will most likely go through a treatment regimen which combines radiation and an oral form of chemotherapy. For most who suffer from GBM, treatment only really prolongs life because the tumor is almost guaranteed to grow back even after chemotherapy and radiation. Through the next few weeks, the McCain family will learn all about Brain Cancer and the devastating effects it has on those who have to endure it, just like another political powerhouse family, the Bidens did a couple years ago.

Former Vice President Biden lost his son Beau to Brain Cancer in 2015, and since then has made it his mission to radically change the way that cancer research and treatments are done with the Cancer Moonshot initiative. The Cancer Moonshot initiative has been a point we can all rally around, and hopefully, these additional efforts will speed new treatments for patients everywhere.

There are big changes happening in cancer research, and there is every reason to hope that discoveries will be made faster than ever before. Initiatives like Cavatica.org, funded in part by Dragon Master Foundation, make cancer research data open to researchers around the world. Additionally, researchers are willing to push their work into new frontiers, like the Children’s Brain Tumor Tissue Consortium (CBTTC) and Pacific Pediatric Neuro Oncology Consortium (PNOC) hospitals who have agreed to share data live during a clinical trial that is set to start later this summer. We are working closely with these initiatives, both through idea sharing and funding. Patient, family and foundation input is being heard more than ever before, and I am optimistic that Senator McCain will be a strong advocate for both himself and other patients facing a similar diagnosis.

I’m confident that Mr. McCain has the fortitude to take this disease on full steam, and everyone at Dragon Master Foundation wishes him well.

Editor’s note:The odds of getting brain cancer is about 1 in 140 for men and 1 in 180 for women. The odds of being elected to Congress are 1 in 600,000. Let’s all hope Senator McCain continues to beat the odds!

This article makes a really good case for big data analytics in medicine. (Which is the heart of what we are working on.) It essentially says that we all have gene mutations making us each much more unique than scientists previously thought. It is really only through compiling vast numbers that we might be able to see some patterns emerge.
This applies to cancer research, but it can also apply to all sorts of other medical conditions. Have you ever had a doctor tell you that your response to a drug shouldn’t cause the reaction it caused it caused in you? That’s kind of the same thing. A drug might do different things to you than to other people because of your unique genomic composition. If you’ve ever dealt with a reaction like this, you know how frustrating it can be. Now imagine your reaction is the difference between life and death. Pretty important, right?
We are laying the groundwork that will help people navigate these situations. Chances are, it will be you or someone you love that needs the answers. Help us now, so we can help you later.

When someone you love is diagnosed with a terminal illness, the gut reaction is to attack that disease. That’s certainly how we felt when David was diagnosed, and our initial efforts were focused on ending Glioblastoma (GBM) because that was the type of tumor David had. We were not involved in the world of research, and that seemed the most logical course of action to us. To strike back at the thing that struck at us.

We thought we knew how to help. As we learned more, we realized that we needed to help find cures for brain cancer as a group of cancers because there is a lot that can be learned by studying them together. We also felt like we needed to help that community as a whole because they are so underserved. A broader goal brought us into contact with many more researchers, and many more ideas.

We were energized by some of the sharpest minds in research, and realized that the kind of analytics we wanted to do are really best empowered by studying all types of cancer, and even other diseases, in tandem. The most cutting-edge research points to cancer being mutations in genes and studying the mutations, regardless of the starting point in the body, is leading to new research pathways.

Cancer is a disease that has plagued humanity for generations. In all that time, we have mostly dealt with it as a disease of a particular body part. We now know that it is much more complicated than that, and we need to empower researchers to follow many pathways.

David had a bright and curious mind. For him, helping researchers was never really about helping himself. It was always about helping other people and solving the puzzle of cancer. Brain cancer is the beast that took David from us, and we would love to see that disease wiped out for good. But what if the answer to curing brain cancer lies in pancreatic cancer research? What if the answers we seek lie in the cure for fibrodysplasia ossificans progressive? (That’s a super interesting rare disease that has been connected to the brain cancer DIPG. You can learn more about that here.)

It’s human nature to strike back at the thing that hits you. But do we really even know what that thing is? Dragon Master Foundation is focused on putting all of a patient’s information into one giant research platform. It’s a database, yes, but it is also a place where researchers can collaborate and gain access to biosamples. It has a patient’s full genomic data, but it also has their treatment path over time. It gives us a more complete picture of what is going on with the patient and what treatments are successful. It can help us understand why certain patients do well on a clinical trial and some don’t. And possibly most important, it looks at patients across many disease types to compare and contrast things like gene mutations. Instead of having one small group of researchers working on a problem, this platform makes it possible for any researcher, anywhere on the planet, to work on high quality data to help find cures.

Tomorrow is #GivingTuesday. It’s a time when people around the world put a few of their hard-earned dollars into the hands of a charity that they hope can change the world. I’m convinced that Dragon Master Foundation is one of the most deserving places you could make your donation. Here are a few of the reasons why:

No one at Dragon Master Foundation gets paid.

We direct all of our research dollars directly into this one project that is already speeding research. (One doctor said that it shaved a month and a half off of his typical tissue request workflow!)

This project has the potential to help patients with cancer as well as a host of other medical conditions.

Through this portal, research can be done on both adult and pediatric populations.

It was listed as part of Vice President Biden’s Cancer Moonshot Fact Sheet.

It is open access – meaning researchers don’t have to be part of a special consortium to access the data.

It is cloud based – meaning the researchers don’t have to download petabytes of data that can take days to acquire. It also means they are not dependent on their hospital’s computational power because they can do their work directly in the web.

Dragon Master Foundation isn’t the only foundation funding this. As of right now, there are 13 hospitals and more than twice as many foundations putting resources toward this project. However, many of them have a specific disease focus where they direct their resources. By donating through Dragon Master Foundation, you can be assured that your donation will go to building the infrastructure that will help all patients, all researchers. This isn’t just a gift to help researchers. This is a gift for mankind. This #GivingTuesday, you can be part of the generation that changes the world.

When David was diagnosed at 16, he was the first person in my immediate family to have a cancer diagnosis. We were shell shocked, to say the least. To be told that your seemingly healthy teen who had a bad headache is going to die… well, nothing prepares you for that. What happens next, though, is something I very much hope we can help parents prepare for.

David went to heaven four years ago, but we have stayed very active in the brain tumor community. It has been a huge part of my life for the last six years. (He was diagnosed in 2010.) I’ve learned a lot since then, some of it while David was in treatment, and some of it after he passed. All of it is information that I would rather forget, but it is important for parents like me to share their journeys so that those who follow after us can have a smoother path.

So here it goes, my top 9 tips for parents who’ve just heard that their child has cancer:

1. GET A SECOND OPINION. (Sorry for the all caps there, but really, this is important.) I don’t care that your doctor has been your family’s doctor for the last 3 decades. I don’t care if you are at one of the top hospitals in the country. Get a second opinion. Doctors are humans, and a lot of what happens in cancer treatments is up to their judgement. You may find that you don’t want to be on the path that they recommend. That isn’t a criticism of them. People are different. Paths are different. You almost always have to talk to more than one institution to know what all of your options are.

2. Do your research. Over and over again, I talk to families who say, “Well, our doctor said it is a ___ and we should do ___.” Then they just do it. We’ve been trained to honor medical professionals and trust their judgement. That’s not a bad thing. But being led around like a blind sheep can lead you into a treatment path that isn’t right for you or your child. When you are given the diagnosis, look it up. Start with major websites that can give you reliable information. A really good place to start is at https://www.cancer.gov/types

From there, look for foundations that specialize in the type of cancer that your child has. Since David had brain cancer, I can tell you that the sites I found useful were:

https://endbraincancer.org/we-can-help/ – to get guidance on what your next step should be. At the time I sought their advice, they were very frank about the type of testing they recommended and what to look for in a doctor, including referring me to a Neuro Oncologist.

3. If at all possible, go to a hospital that has a brain tumor team. ABC2.org only lists hospitals with a dedicated brain tumor team. The world of brain cancer research was virtually stagnant for many years, but in the recent couple of years, discoveries are being made very rapidly.I don’t think it is practical to expect a doctor that deals with many types of cancerto stay on top of every new treatment coming down the pike. Most will wait for the “tried and true” treatments before they change their recommendations. Brain cancer patients frequently don’t have that kind of time. Cutting edge treatments could mean the difference between life (or at least extended life) and death.

4. Ask every question you have. Write them down between appointments and don’t be shy about going through your list. The medical staff is there to help you and your child and the first step of that is making sure you understand what is going on.

5. Don’t be afraid to “fire” your doctor. I know that isn’t going to make me very popular with some folks, but here’s the deal. This is the single most stressful thing you will ever go through. You need to know that the doctor is 100% on your side and will fight for your child. If they ever make you feel like you are wasting their time, or your child doesn’t deserve treatment, move on.

6. Seek help. If you have found a doctor you like, but they are far away, ask for help. There are many foundations that fund travel and related expenses. Hospitals themselves sometimes have funds or auxiliary groups who can assist you. Crowdfunding websites help people raise money all the time for just this reason. You aren’t a slacker if you need help paying for all of this. Treatment is expensive. Time away from work means you have less money than normal. Going to doctor’s appointments means you need extra daycare, pet care, home care. It adds up. You can find a list of resources for brain cancer patients at http://www.dragonmasterfoundation.org. (Full disclosure: I’m President of that foundation.)

7. Make a Plan B. For everything. You may have a reliable vehicle, but what happens if your transmission blows? You have a friend picking up your other kids from school, but what happens when they get the flu? Most likely, you have people offering to help you, but they don’t really know what to help with. Get them involved in your plan B.

8. Make a treatment Plan B. I could have included this above, but this is super important. If your child has an aggressive cancer or one that has a high probability of recurrence, ask your doctor to tell you what the next line of treatment is. Time after time, people are lulled into a sense of security because treatment is going well, and the BAM! The cancer comes back. Everyone wants to believe the treatment will work, and if it fails, you have that same shock that came with diagnosis. Knowing what the next possible treatment is can really help you feel more prepared.

Side note: We were blindsided when David’s cancer spread. He had been on a clinical trial and was doing so well that his results were presented at a conference. We just knew he was going to beat his cancer. When it spread, we were kicked off the clinical trial and had to scramble to figure out what options were available for him.

9. Trust yourself. All of the tips above are for families who are prepared for an aggressive battle. However, not every family chooses that path. We were fortunate because David was a teenager and could tell us his wishes for treatment. Most parents are dealing with younger kids who may or may not understand the repercussions of treatment. We had an amazing neuro oncologist who would always lay out possible treatment options to us and the last choice was always, “or you can do nothing.” David had glioblastoma multiforme, and even now, six years later, there are no easy answers for that type of cancer. Brain cancer is a tricky, nasty beast. If there were one thing that was certain to work, I would recommend it, even if it made the child feel bad for a while. After all, what is six months of feeling bad compared to the potential 77 years of life lost when a child dies from cancer? But with brain cancer, there are no guarantees. Heck, for the aggressive cancers, there is very little hope. The families that push forward with treatment do so because it feels right for them, and frequently, because they want to help other people.

David was pretty adamant about helping others. His tissue was donated to research, and it is now part of an open access database that is empowering research around the globe. (This is also a project funded in part by Dragon Master Foundation. For more info on that, go to Cavatica.org.) It was a heart-breaking journey, but it was not in vain. I know that David would be thrilled to know that researchers are sharing data and working around the clock. We don’t know the answers yet, but I have every confidence that they are on the horizon.

I used to preface my help to people by saying “I’m JUST a mom…” because in the world of cancer research, I don’t want to come across as a doctor or researcher. However, my hard earned “momcology” degree is valuable, and I’m moving forward with a sense of purpose that my message is important and needs to be heard. Do you have tips you’d like to share for newly diagnosed patients? Please share them in the comments!

This week has renewed my faith in humanity. It’s so easy to sit by and watch the world slowly spiral out of control, but it’s really not hard to make it stand still, either. when you are told there is nothing more they can do for you loved one, be it your child, your mother or your husband, your world stops. But only for a moment, and then it starts falling. The more time that passes, the faster it goes. You’re hurtling toward an abyss with nothing to slow you down. With a lot of help, this week, we were able to slow that time down for a family who is so desperately looking for a cure.

Orlando is a sweet 11 year old boy who lives in our hometown. He has two sisters and a brother, and a family who loves him very much. And the local doctors told the family it was time for him to go on hospice. No more options. But that wasn’t acceptable to his mom, Lacy. She kept searching for a way to save Orlando. There are no guarantees in the fight against brain cancer, but she found a treatment that offers Orlando some hope. Some more time. But that treatment was half a country away.

Dr. Santosh Kesari has been working with brain cancer patients for his entire career. From Harvard to UCSD, he has gone where the research took him, searching for better treatments for people with brain cancer, specifically glioblastoma multiforme, which is what Orlando has. In the past few years, he’s had some success with a drug called Everolimus. Everolimus (Afinitor Disperz) got accelerated approval for subependymal giant cell astrocytoma is adults and children in 2012. Afinitor Disperz is the first pediatric formulation to be approved by FDA for the treatment of a tumor that occurs primarily during childhood. (In layman’s terms, astrocytomas turn into glioblastoma multiforme, so that is why this drug is a possibility.)

I know it seems like something that has been FDA approved since 2012 should be common knowledge, but the 5 year study results haven’t been out that long. (Five year study results: http://www.ncbi.nlm.nih.gov/pubmed/26381530) With brain cancer, you really need a doctor who is paying attention to the very latest studies to try and gain as much quality time for the patient as possible. Dr. Kesari isn’t just paying attention – he’s one of the ones paving the way.

But finding a possible treatment is just the first step. Dr. Kesari needs to evaluate Orlando in person to make sure this is indeed a viable treatment option for him. (All other labs and scans would indicate that it is.)

With brain cancer, the clock is such an enemy, but treatments like this give us real reason for hope. On Orlando’s behalf, we reached out to the community for help to get him and his mom to California to see Dr. Kesari. Thanks to Brad Pistotnik Law and a very generous offer of the use of a jet, we will be able to get Orlando and his mom to Santa Monica on Monday. We found out yesterday that there is enough room for Orlando’s sister to go, too, and we are so happy that she will be able to be there and give him moral support. They are only 15 months apart, and they are very close.

There will be additional expenses for this family while they are split up trying to care for Orlando and his siblings. Dad is staying in Kansas with the two youngest children, but he works so they need additional childcare. Orlando’s meals will be at the hospital, but there is no coverage for his mom and sister for food. Also, this is an “out of network” hospital, so there will be higher medical bills.

Dragon Master Foundation recently adopted a change in our bylaws to be able to help families in this situation. A brain cancer patient can be sponsored by a person or community, and donations can be raised to directly help that person. The first person to benefit from this new program is Orlando. If you would like to help the family with expenses, you can text the word “cancer” to 91999.

If you can’t help financially, please share this story and join our Thunderclap, an effort to help win a million dollars for cancer research. You can join the Thunderclap here: https://www.thunderclap.it/projects/44920-love-is-on-to-conquer-cancer

I had big plans to be super organized heading into May this year, but for various reasons, it just didn’t happen. So here we are, on May 4th (Star Wars Day!), and I’m just now making a post about all the ways you can get involved this month. There was a big event on May 1st in DC, Race for Hope, so I’m sorry for not getting word out to all of you in time to participate in that. It was only the first of many events this month, though, so without further delay, here are some ways you can get involved:

Wear gray. It’s the most simple way to show your support. Grey is a pretty bland color, though, so to really get people’s attention, you might need to draw some attention to yourself. Maybe some crazy hair, or a Hawaiian shirt on top of your grey… something te get people wondering what’s going on with you. 😉 You can even take a gray selfie and enter to win a prize!

Support on online fundraiser. Maybe you’re busy. We get that. So skip coffee or drinks for one day and donate that money to an online fundraiser. You can find some worthy places to donate at these links:

Go to an event! This one is a little bit trickier because the events are in specific geographic locations, but if you can make it to one, please do! The folks that organize these events put a lot of hard work into them, and it physical events can be a real boost for survivors. I’m listing the ones I could find by date and then location.

Cancer can be one of life’s most difficult challenges. It has brought more pain to my life than I care to remember, but it has also given me great awareness of the little moments in life. I think it teaches a lot of people about gratitude, frequently in ways we wouldn’t imagine. I know trying to imagine what it is like to live with a cancer diagnosis can be overwhelming, especially if you think about it being your child or other loved one. It’s sad and scary, and well, I don’t want to think about it either. But I do want to bring attention to the need for research. I want you to think about ways we can cure cancer. I want you to think about it all the time – like those of us who have been faced with it in our daily lives.

But how can we think about it, and act on it, without being overwhelmed by it? After talking with a lot of folks, I think I found a way to shed some positive light on the issue. We’re going to start a sort of gratitude journal, where we can focus on those little moments that are good, that are special because they are so normal. We want you to see how grateful cancer patients and their families are for those little things.

So here’s what I need from you. I need you to start sharing those moments with me, so that Dragon Master Foundation can share them with the world. We’re going to call them #MomentsofMagic . They can be anything you want – as long as it was a moment that was special to you as a cancer warrior, caregiver, loved one or friend. We’d love to share pictures with the stories as well, so send whatever you would like to share to amanda.haddock (at)dragonmasterfoundation.org.

Together, we can focus on the positive. As Dumbledore would say, “Happiness can be found, even in the darkest of times, if one only remembers to turn on the light.”

We stumbled across another online competition. This one is for $5,000, but it ends on Sunday! Since Sunday is Valentine’s Day, this seems like the perfect chance to share your love with someone in a very meaningful way.

The app is free, but it is only for iPhone users running OS 8.1. That limits the pool of potential helpers a little bit, so we are depending on all of you to help us spread the word. The app is pretty straight forward, but I’ve had several people ask questions, so here’s a quick walk-through:
1. They download the Small Token app.
2. Launch the app & click “Give A Gift”

3. Enter the email address of the person they want to honor.
4. Choose Dragon Master Foundation as the nonprofit (Type in “Dragon Master” and you get it)
5. Enter an amount. $1 is fine!!
6. Schedule the delivery – anytime between now and any future date.
7. Enter a personal message. It can be a thank you, a Valentine wish – anything!
8. Hit “preview”
9. You will see an orange screen with a heart. At the bottom, you can hit “edit look” to change the color and the icon. Pick what you like, then hit done.
10. Hit “continue” & you will be directed to Give Lively where you can enter your payment information. After you enter your info, click the donate button.
11. You will get a Thank You message, and you are all done!!

I know that looks like a lot of steps, but really it is pretty simple.

Please go enter a donation today and actively encourage others to do the same. We just started last night, and we’ve gotten over $100 in donations already, so it is worth a few minutes of your time.

If you would like to help spread the word on social media, here are some possible tweets:
Pls download @SmallTokenApp and send a greeting to help @DragonMasterFdn win $5,000. #charity with the highest # of donors wins.

Thank someone today by donating to @DragonMasterFdn in their name w/@SmallTokenApp. You could help us win $5,000! #endcancer

Help win $5k for #research 7& give a #cancer warrior a smile by donating to @dragonmasterfdn & sending a greeting through @smalltokenapp!

It’s World Cancer Day, a time when lots of people are thinking about prevention and cures. I think it is a very hopeful day, when we can rally together and bring awareness to a disease that plagues our society. I’m completely convinced that we could rid the planet of this disease within our lifetime, and I’m heartened to hear more and more people uttering similar beliefs.

At the moment, though, the disease is at large. We never know who might get it or when. My son was 16 at diagnosis but became an adult (18) while fighting brain cancer. He went from a child that we made decisions for to a young man who should have made his own decisions. But cancer was undermining his decision making process. He struggled to make sense out of things that would have been simple for him a few months earlier. He was smart, but cancer robbed him of his confidence. His own mind played tricks on him, and he wasn’t sure of himself. It was a scary time for all of us, and though he was a technically an adult, we still made decisions for him to the best of our abilities. It’s hard to know what another person truly thinks – even if it is your child or your spouse. You do your best, but it is hard to keep the doubts at bay. The best step to avoid this situation is to be proactive. Make a plan before you need it, and you can be more at ease during life’s most difficult times.

I think most of us have the best of intentions when it comes to getting organized. We even take steps toward doing it. Some sort of filing system for your tax papers. Maybe a safe deposit box for important papers. But there are a lot of legal documents that most of us avoid. Wills. Advance Directives. Stuff that means not only are you an adult, but an adult who might one day die. Scary stuff. But it doesn’t have to be.

I found this really cool article from Everplan that walks you through a lot of those important adult things. It’s relatively painless, and it is super important. I talk to families all the time who spend grueling hours trying to decide what their loved one would have wanted if they could have decided for themselves. Brain cancer frequently steals away the ability to make good decisions – and it happens long before most people are prepared for it. So take a few minutes now, and check out this list. Make it a priority to work on it steadily for a few weeks, and before you know it, you’ll have all those “adult” things behind you.

Let me just start this post by saying I just got bad news. I’ve come to know a family very well through their son’s GBM battle, and I just found out they are sending him home on hospice. No more options. He’s just a little boy. His Caring Bridge page has a rocket ship. He likes Legos and Star Wars. And they don’t have any other treatments for him. He is struggling to breathe, as many warriors do, because the tumor is pressing on critical parts of his brain. I’ve sat beside my son’s bed and watched that all happen. I’m horrified that they will have to do the same.

With each new family I meet, I think to myself, “I hope this is the one we save.” And I believe each time that it might be that person. That dad, that daughter. When I express my frustration in the timeline to those around me, they are always quick to say, “but look how far you’ve come!” That may be true, but it isn’t far enough, fast enough. We’ve made amazing headway. But it isn’t saving Jack.

When I post on Facebook or Twitter about these kids, people are quick to offer prayer. They are even quicker to send a birthday card or gift to the sick child. That gives peace for a moment, but I want more. I want the same kind of action and passion toward curing these warriors so that we don’t feel the need to make their birthday special because it is probably their last. Which brings me around to my question. Is empathy better than apathy? Are we really helping anyone by feeling sorry for them? When you read those stories and posts and think, “oh how sad”, does it incite you to action?

Today I read some of the comments on VP Biden’s Cancer Moonshot post. At that time, there had only been 125 people who had shared their cancer stories. My story is near the top with only 10 likes. Are you kidding me?!? The Vice President of our country is finally making cancer research an issue and only 125 people could be bothered to respond? I get that not everyone likes to write about that stuff, but everyone could go click like on a story that resonates with them. Is cancer research important to you or not?

I’ll be perfectly honest. Six years ago it wasn’t a priority for me. I thought most cancers were curable, and that the ones that weren’t were extremely rare. I was wrong. Cancer is still a devastating disease that takes many forms – quite a few of which are virtually untreatable. Oh, they will do some form of treatment for everyone, but in cases like brain cancer, they know it most likely won’t do much good. May God bless the folks who go through these treatments knowing it may not help them, but it might help someone else down the road. David did that. And that’s why I am so passionate about this. If I had gotten passionate about it 10 years ago, maybe we could have saved him. But I’ll be damned if I sit by and let other people die when I know that science is capable of better treatments, and yes, maybe even cures.

When I was reading those posts, several people asked what they could do. No one had responded to them, so I did. I told them to volunteer with groups who are looking to change the status quo. Post on social media in support of those groups, and financially support them whenever you can. If we want change, we have to make it happen. Today the bad news went to Jack’s family. It could be anyone else tomorrow. Seven more children will be diagnosed tomorrow. Three of them will lose their battles. Every day. To me, that means we have absolutely no time to lose. What does it mean to you?